We Can Do Better.

I noticed an article in The New York Times recently titled “World Health Organization Urges More Care In Naming Diseases.” In early May, the WHO issued new guidelines for naming infectious diseases in an attempt to avoid damaging inaccuracies and stigmas that often the name alone can cause. They emphasized caution and symptomatic detail when choosing one; no animal names like ‘Swine Flu’ or peoples names like ‘Lou Gerrigs Disease.’ The new guidelines are a proactive attempt to prevent “Unintended negative impacts by stigmatizing certain communities or economic sectors.” They also mentioned that “The best practices apply to new infections…for which there is no disease name in common usage.”

Of course I read the article expecting to see CFS as a prime example of how damaging the effects can be from a poorly named disease. When Myalgic Encephalomyelitis was renamed “Chronic Fatigue Syndrome” in the early 80’s, it solidified an environment of dismissiveness, doubt, and critcism. A new stage was set: everything from the publics skepticism to the medical establishments cold shoulder were put into place, and little has changed in 30 years. Now if you had the misfortune of being sick with this disease, you were going to have two battles to fight.

I don’t just hesitate to say those three words out loud, I feel anxiety about it. Sometimes in doctors offices, I feel shameful saying it out loud, as if I’m confessing to how many packs of cigarettes I actually smoke each day. When I’m forced to say it, I swear I can hear any perceived validation deflate out of the room like a popped, zigzagging balloon. The words don’t hold any water on their own; they necessitate explanation that ends up sounding like defense. The words “Chronic Fatigue Syndrome” are not only misleading and insultingly trivial, they sound like a hypochondriacs failed attempt at making “tired” sound serious. And that seems to be the general consensus–that this is a “disease” where people simply feel sleepy all the time. Sleepy is for kittens and babies, and the primary symptoms of this are far, far beyond the bone crushing fatigue we experience. But this is the problem with labels, namely inaccurate ones. There is damage in what the words imply and even more from what they fail to say.

Here’s an example. A few months ago, the Institute of Medicine released a 600 page report devoted wholly to examining and better understanding CFS/ME. The committee not only provided new diagnostics guidelines and better disease management, it acknowledged the severity of the disease and put to rest the idea that it is at all psychological. Surprising many, they acknowledged the issues stemming from the name CFS and suggested a new one: Systemic Exertional Intolerance Disease. (SEIDS) It doesn’t exactly slide off the tongue, but it does finally address a discerning symptom of ME, which is the adverse reaction, down to a cellular level, to even mild exertion. This is far different than general fatigue. An exhaustive study like this one from an Institue with no previous involvement with the disease is a huge step in the right direction. The validation it provided for many sufferers was big, and the recognition of the staggering lack of science and funds to support it will presumeably apply more pressure at the federal level for a major increase.

I happened to read about the IOM’s report and name suggestion from NPR News, which I follow on Facebook. When I saw the hundreds of comments underneath the article I decided to look, and they weren’t anything out of the ordinary. Out of hundreds of responses, most of them were like this:

.

Thanks, Steph. I’m cured!!!!

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Totally! It’s like I’ve never met anyone with Diabetes who can eat copious amounts of sugar. It’s obviously bullshit!

Em, you don't have this.  -Mary

Em, you don’t have this.
-Mary

.

This person actually doesn’t believe in Carpal Tunnel so I don’t know where to go from here.

NOPE!

Hi Brianna, NOPE!

I know it’s a leap to project the reactions of a few Facebook commenters onto the general public. But in this case, these attitudes are not at all the exception. They represent a ubiquitous perspective most people have, whether online or in person. And maybe it’s redundant to say, but this is simply not a normal response to sick people. It just isn’t. It’s easy to see why sufferers hesitate to say the name out loud at all. Look at the environment we’d be entering into.

So, is this of any consequence? Does it really matter that the general public understand a disease? Not really, besides the demoralizing and crappy way it makes already sick people feel, no, it doesn’t. These people aren’t doctors, (most of them) and so who cares really? Besides basic human kindness, is this of any real concern?

The thing is, yes, I think so. Namely because this attitude pervades more than an uninformed public. This lack of concern, eye roll response travels all the way up to the federal level. Or maybe it trickles down from it. It’s hard to say anymore. Irregardless,  by now the two are in some osmotic relationship– One fueling and informing the other. And when this is the attitude at a federal level, the effects are far more detrimental and consequential. $5 million allocated toward research for the last five years from the NIH is a detrimental effect. No cause, no cure, and zero FDA approved treatments are all the result of a disease not getting the attention it requires. Ironically, people who are sick with this don’t want attention at all. They just want to get better so they can have their lives back. But the shot at finding a cure relies heavily on the desire to find one and fund the science for it. When the perception of it is so casual and misinformed, it contributes to negligence– it prevents that possibility of a cure the way it has for the last quarter century.

I can’t help but wonder if the same outrage would exist from people if the disease went by its original name: Myalgic Encephalomyelitis. Would people scowl at its existence and call someone with the diagnosis a lazy-ass complainer who just needs to eat better? Would they judge them for being too sick to work? No, because those responses are not to a disease called Chronic Fatigue Syndrome. They are responses to feeling fatigued; one is fire cracker, the other is an atomic bomb. I realize all of this may seem a little petty. It’s just a name and there are bigger fish to fry when it comes to this illness. But I cannot help but wonder if what’s fueling the size of those fish is at the core, a simple misfortune of a name. It’s crazy to think that a label could do such harm or have such far reaching effects, but I don’t doubt it in this case. The evidence is right there, in this abnormal anger healthy people have against sick people as if they’ve chosen to be sick.

The point is not to harbor on issues I cannot change and I know that. Forward is the only direction now. But there’s such a lesson here in accepting things at face value and the harm it can do when we trust that we know better, before knowing much at all. It’s not just a poor social stigma we’re dealing with. It’s having a totally debilitating disease which costs the country roughly $18 billion a year in lost productivity, and the lowered chance we have at getting better because it just doesn’t appear or sound serious enough. This is where labels have much larger implications than just confrontational dialogue and ousting sick people. It’s bigger than that.

It makes me think of the way I perceive things and other people in my own life. How easily I make up my mind sometimes, one way or the other, about all kinds of things. I think of hearing or reading about issues and people and how fast and automatic a decision or feeling arises inside me. Sometimes I’m proud, thinking I know better about something, even when I hardly know that much at all. I think, if I never would have gotten sick when I was nine, were I still a healthy, functioning person 30-year-old, quick thinking and totally capable, and I heard of a “disease” called “Chronic Fatigue Syndrome,” what conclusion would my mind jump to? What feeling would I get? If all I had to go on were those three words, given that I wasn’t a doctor or otherwise well-versed in diseases, what would that label say to me? That name in its own twisted way, appears to say everything, enough for people to hold up their hands and say “I’ve heard enough, thank you.” Enough to feel decidedly one way or another without hesitation. Quick decisions and judgments like that do harm for all kinds of people with respect to all kinds of issues. I think we can learn from this one, and do better in the future across the board when it comes to making up our minds but remaining strictly at the surface.

Illness is not something to undergo alone, and anyone who has experienced it long-term will tell you that. When people email me about their families dismissing them, doctors referring them to psychiatrists, or marriages that crumble because someone is suffering from a disease with so few options and a world that just doesn’t quite “buy” it, I feel angry and discouraged. Mostly because I believe in the good-heartedness of people and I know we’re better than this. We can do better. Turning your back on someone who is sick is more than insult to injury. It causes its own tragic pain, separate and worse than the physical kind. It’s a new kind of loneliness, in a time you need people the most. After twenty years of being sick, the last five being the sickest, the hardest and most demoralizing part is battling something that so invisible to everyone else, all the while your whole world is crumbling.

The truth is even though it’s still massively lacking, there is more research than ever going on, and thanks to recent reports like the IOM’s and the Pathways to Prevention, pressure is building to invest more into solving this thing. My hope is that in the meantime people will be at least a little diligent before ousting an entire population of sick people as hacks. I hope if you’ve got major beef with the illness, you haven’t just heard the name and stopped there. To learn more about it, Cortjohnson.com is a great resource with vast information, including current and future studies and well-written dictations about their meanings.  To those who are sick and discouraged, I hope you’ll read this and have faith that you’re not alone and that the answers will come. Progress is slow but it’s moving. Until then, please don’t lose hope. Worse than being sick is the thought that our life is over if we never get better. There is value to gain in all of these experiences, whether you’re sick defending yourself or dealing with someone who’s sick with something you don’t understand. But try and remember we’re all brothers and sisters here. We need each other. Maybe the history and politics of this disease hasn’t been our kindest hour, but we can still turn it around, even if it’s one less person casting judgment or turning someone away. As is the case with all social change, it always begins with one. We can all do better, and I’ve never lost hope that our future will be far brighter than our past.

Labels and categorizing are important, they exist for a reason. But in the case of CFS, and the WHO’s new guidelines for naming disease with caution, help exemplify the power and possible harm of labels. They must be chosen wisely. The  CFS label was not, and it did an injustice to millions of disabled people. But it doesn’t have to stay that way. And despite how long and twisted the history is, it’s not ever too late to turn it around. Slowly but surely, I believe that change has begun and we’re on the cusp of something major. Despite my bad days, I believe in the awesomeness of humankind. We can do better. So let’s begin doing it now.

Health, Happiness, Better.

Time To Kill

A little while ago, I was swinging on our porch swing while Monty did acrobatics with a stick and ran laps in the yard. I had been down for some time, but I couldn’t place exactly the source of the sadness. All I knew was that I could feel something missing and the result was not a loneliness but a “looked over” kind of feeling. It’s not uncommon for me to feel lost and uncertain about the direction and usefulness of my life, especially when I’m in a crash period. This feeling felt like it had roots in that. As I let my thoughts wander and my mind clear, these words entered my head and seemed to quiet the residual buzz: “I just want to make myself proud again.” It didn’t repeat itself like an incessant thought, rather the words just stood still in bold print, front and center in my mind. And then all at once I knew what that void I’d been feeling was. It wasn’t just a lack of pride, but the lack of pride and purpose that usually comes from working. Uselessness is a terrible feeling, and I know it arises sometimes from the fact that I don’t have a real job anymore. I haven’t in some time. And yet through this whole ordeal, that loss continues to cuts deep. It has me constantly wondering what I’m doing here and where I’m going and how I’m ever going to get there. As a working girl my path felt so clear-cut. I catch myself daydreaming of my desk and my business cards and the “importance” they implied.  But once the crutch of a job was gone, everything inside me felt upside down. Who am I if I don’t “do” anything?

Sitting in my bosses office and having to admit with a quivering voice that I “just physically couldn’t do it anymore” was one of the hardest moments of my life. My whole goal up until then besides getting better, was to find a way to hold onto that job. I knew if I was forced to leave it, it meant everything was irreversibly real. It meant despite what I planned or wanted, the illness was making decisions that I couldn’t change. It meant the scales had tipped and I was no longer in control. (Maybe I never actually was, but the illusion felt good) But now here I had come face to face with the truth that clinging onto the job was only causing me more suffering, besides largely effecting the quality of my work. Were I smarter I would have given in earlier and dedicated myself more seriously to getting well. But I was in a sort of denial up till then. I kept expecting to get better. I didn’t want to believe that this was truly going to be the new state my body. No one really wants to accept something like that, I think out of an inborn fear that doing so means you’re giving into something crappy and letting it take over–That you’re giving up on the possibility of getting well. But it was more just coming to terms with a reality and giving my health the attention it needed. Everyone around me seemed to know the time had come and were just waiting on me to call it, so I finally did.

I can remember solidly a few things from that conversation. I can still see his big sappy eyes as Andrew listened to me speak, and the honest calmness in his voice when he said  “It’s been hard to watch. I just can’t understand why this would happen to you.” I tried very hard not to cry but the tears fell anyway, much like they are now just remembering the whole interaction. We hugged goodbye and I tried to compose myself. I remember, I think in an attempt to lighten the sadness of that goodbye, him saying to please stay in touch and to come back and visit often. I said I would, knowing I probably wouldn’t. Knowing that life at the gallery would go on without me, while my own life was drifting into scary, uncharted waters. I punched out for the last time and felt totally numb. The French Quarter had just turned dark, freezing and damp, but I didn’t feel the cold at all. I paid the nice parking attendant with whom I normally joked around without even looking him in the eye. He made some comment about cheering up or smiling but I couldn’t bring myself to respond. I moved on autopilot like a robot. Once in the car all the terrible questions made their rounds. What would become of my life now? Who would I be now, sick and unemployed? What if I never get better? I tried to drown them out but the noise of the radio bothered me. That 40 minute drive home over the bridge felt like a dream. Once home, Monty ran up to me and my mom was sitting in her chair in the living room. Our eyes met and I lost it. “Well, I guess I don’t have a job anymore.” And that, as they say, was that.

Even though I fought it, leaving work was the right thing to do and in my condition, was just a matter of when and not if.  In the beginning it was a relief– not to have to fake well, to call in sick, to let down coworkers, and to constantly apologize. But not so long after, I began to feel this noticeable hole, like the gap your tongue slides through after you’ve lost a tooth. I had all this new time to kill but couldn’t spend it how I’d like. The adjustment was extremely difficult. Besides giving me purpose and pride, my job had contributed to my identity and livelihood. There was a little space carved out in the world called Mary, and I was useful there; I fit. I did what was expected of me and was paid every two weeks. But now I no longer occupied that space and I couldn’t make sense of what place I held in the world. Without the distraction of work, I also had to learn to just “be” and accept these new circumstances, which was also hard. When you’re sick like that you can’t just leave and go for a drive, or go get drinks with friends to feel better about it. It makes you confront your life head on since there aren’t the typical escapes. I had to begin accepting my experience and not thinking of my days sick in bed as total wastes. I’m still learning to do this, but it is possible. It began with adjusting the expectations I held for myself, and redefining what my definitions of “work” and “purpose” really meant. For so long work was something you did 40 hours a week and got paid for. And our culture nearly defines who we are by what we do. I no longer had a satisfying answer to that question. “Uh, Unpaid blogger I guess?” It took adapting to where I was at that point and not in the past. I was always going to feel shitty comparing my life sick to someone’s who was well. I had to get real about my truth. Still, those adjustments were hard and I am still learning them.

Life with illness means a lot of time on your hands and a lot of solitude. You have to learn how to be still, which I’ve learned very few people know how to do. You’re away from the typical distractions and noise and chaos often, so there is a lot of “being” and not “doing.” It also means getting to know yourself really well. Luckily, I like myself. We seem to get along. But all of this new vast time without a lot of outside expectation took a long time to really understand and warm up to at all. I had to remind myself that being sick is a part of me but not who I am. That took time too. As time went on I would grow more worried that I hadn’t re-entered the workforce. Or I’d feel these waves of inadequacy like I did recently. But sometimes I wonder if it isn’t the purpose of my soul that’s getting carried out because I have a body that doesn’t allow me to be busy and caught up in the regular tasks of life.

This experience has taught me big things and continues to now. It continues to teach me to let go of things, to be still and not be restless, to be OK being alone, and to accept myself as worthy even if I’m not doing anything impressive or achieving BIG things. Most of these were learned because my body wouldn’t let me achieve all I wanted to, and the lesson in humility has actually made me happier in some ways. All of it has made me come to terms with things that I truly find important, things outside of a job where the ultimate goal was money. If I look at this time away from work another way, it feels more like a gift. It’s allowed me to find and develop my voice for writing, which was my passion all along. It’s let me explore many other parts of myself that were not a part of my life when working. Even small things like learning to play my dads guitar and spending more time with my family that I wouldn’t have otherwise. It’s forced me to find the same joy and fulfillment from the small things that I used to require in the bigger or louder stuff. Today it was just being outside in the sun with monty and appreciating the moment.

I think it’s easy to look back on my life with a “real job” through rose-colored glasses.  I was “bringing home the bacon”and dressing in nice clothes and looked and sounded like someone who had it together. But I can still remember sitting at my desk sometimes and thinking is this it? This is what I do the next 60 years and then I retire? I’d be naive to say things were perfect and always made sense then, too. They didn’t. But it looked better on paper and gave me stuff to talk about when people asked what I was up to. Those conversations are funny now ;)  I was still wondering about my purpose and the meaning of things then too. I was still asking those same questions. The only difference is, I don’t have the disguise anymore. I am clearly not headed in any predictable direction and I truly don’t know what the plan for my life is. But, at least I’ve got some time to figure it out. All kinds of time.

Still I wonder, were I to be better tomorrow, totally healed and ready to emerge back into the quick-paced world, is that what I would do? Go back to work at some job, have office birthday parties again and two-week vacations, and then all my problems would end? I doubt it. What I mean is, I don’t think that’s what this experience is about. There is something more to it than a temporary roadblock for my life. I know it has more to give me than suffering, and my work is to try and bring light to what has felt very dark. I think by learning to navigate any experience the right way, it’s never a total loss. Sometimes it’s the very thing that propels us or makes us better. There is always more meaning and a path to discover if we stay devoted to following the thing that makes us feel alive– this usually leads to finding our purpose, our spot where we fit. I guess it’s the days when I know that who I am is bigger than the things that have happened, that I still have things to offer the world, and I accept the course of my day even in its smallness, that I make myself proud again. It’s often not in what I do anymore, but in how I receive each day and whether I live it out as a gift or not.

Even if all I do is try, that is truly enough.

Health, Happiness, #SickPride

Homeopathic Migraine Fix

When you don’t have your medicine, or your medicine isn’t working, and you’re caught in the throes of the diabolical, all-encompassing shitstorm known as a migraine, this could help save you from the depths. It has relieved my mom (fellow migraine sufferer) and I on many occasions. This was a trick she learned from a neurologist in the 80’s when she first became ill and suffered lights-out migraines, for which there were no prescription migraine drugs at the time. (I cringe) Sometimes she would have to endure the pain for days at a time in a dark room or end up in the ER when it could not be controlled. It was a rocky road no doubt, but this trick she learned helped rescue her from some bad ones, and when she shared it with me I was surprised to find it alleviated my terriblest horribliest vomitiest of migraines. And it’s pretty easy to do. I just figured I would share it with yall and if it helps even one person out of the fiery pits of migraine Hell, well then, we’re all winners really.

Here's what a bathtub looks like, in case you're too sick to remember.

Here’s what a bathtub looks like, in case you’re too sick to remember.

1. Get in a hot bath. The hot water helps draw the blood down and away from your head. If you can’t get in a bath, try using a heat pack around your feet or soaking them in hot water, but I find baths best. Try to sit upright even though all you wanna do is lay down and die. I get it, but sitting up will redirect the blood flow faster. And when you’re under attack, speed counts.

2. Wrap an ice pack around your neck. If you don’t have one, use whatever you can find in your freezer– frozen peas or strawberries or deer meat from your uncles hunt last year. All is fair in love and migraines. Wrap the ice in whatever form around your neck at the base of your head. The ice helps restrict the blood flow to the head, which is where your blood vessels are spasming, and redirect it downward. Think South. You want to send everything South.

3. Drink hot black coffee. Not some frappuchino crap either. You don’t want the sugar. If you can’t do coffee, I imagine a strong black or green tea could offer the same result, but I have only ever used coffee, so I can’t really endorse that one. If you’re like me you get crazy nauseous and often vomit during a migraine, so eating or drinking anything is the last thing you want to do. But just start with one sip. This is your way out. Keep taking small sips, and soon you’ll feel the first tinge of relief and find your stomach has begun to settle. I am unsure what mechanism exactly is responsible for this relief, but it’s there. Perhaps it’s stimulation of digestion plays a part–not sure. But more importantly, it’s a major help in quelling those haywire blood vessels in your brain-effectively serving the purpose of an OTC or RX migraine drug.

Caffeine works in an interesting way. There is a molecule called adenosine that is responsible for dilating the blood vessels in the brain. Caffeine mimics this molecule and competes with it at the receptor site. Once displacing the adenosine, it gets in like a ninja and constricts the dilating blood vessels– the ones causing that UnGodly pain that no one should feel. But we do. Welcome to life homies! Not to mention, caffeine has long been used in conjuncture with pain medicines as it aids in their absorption, particularly acetametaphine. So in the least, it can give some your pain relievers a boost if you take them. There. Now you’re cured.

It’s all about the power of three here; one alone won’t cut it. The triple threat is your best bet. I am of course not a doctor clearly, and everyone is different; it may not work for all. And obviously miracle drugs like Maxalt  and the like are more convenient and don’t require a bathtub. But when you’re desperate for relief, try this. In my experience the the proof is in the pudding. It has without a doubt saved me from immense suffering on a few occasions and my mom on many more, even when the strongest meds have failed.

The sooner you react to one the better, so act quick. Get naked, get ice, drink coffee. And once you’re able, drink a lot of fluid. Dehydration is found to play a big role in migraines, so replenish your electrolytes and restore your fluids asap. Especially because you probably puked them all up. On that note…

Good Night and Good Luck,

Mary

Thanks mom!